Stubborn trigger points (Ramana's Case)

[ramana]

Thanks webslave and brettp for the response. Fortunately I don't' have CFS. On every visit I asked the dermatologist about if the lymph nodes are swollen. He said no. Now I did a google search of pics for lymph nodes and I got this

Honestly to me the way the network is shown is exactly like a lymph node because the tenderness is along a line. But then dermatologist and PCP repeatedly have said that it is not lymph node. Could they be mistaken?

In any case is there any remedy. RAST for wheat, oat, rye, milk, is negative IgE< 3.5. Even then I am going on a gluten free / dairy free diet .

[webslave]

Yes, they could be mistaken. I had a few docs tell me that the glands were fine, but only one admitted they were palpable and tender (under arms, under margin of ribs). My skin test for wheat was mildly positive only, yet gluten is a killer for me. You don't have fatigue?

[ramana]

No fatigue. Keep fingers crossed and hoping that does not add to the problem. Even if the glands are swollen what is the treatment (apart from SP)?

I am really befuddled with all this. 40 PT sessions + SP for 10 months + Dr Wise clinic. And still not in a functional state. I don't think I am very anxious. I have done paradoxical relaxation to the best of my abilities (there is really no way to determine stress level. I am doing very good on stresseraser - stresseraser.com).

So need some brainstorming session on what to do
Thanks for any suggestions.

[webslave]

What are your exact symptoms now? Is the fissure active? Where is the pain?

[ramana]

Thanks webslave
Exact symptoms:
Pelvis:

• Left side testicular pain (referred by TrPs on the transverse perineum/anterior levator ani near the prostate). On pressing the TrPs though - tip of the penis pain happens. On gently touching them testicular pain happens. Sometimes if it is a lot it radiates to the abdomen/suprapubic
  Left side rectal pain(cramping is more accurate term)(no one can find the TrPs for this so far: stretching the muscle helps)

No fissure; no hemorrhoids; no abscess. Checked last week with an anoscope

Headache described as migraine
Right arm/shoulder pain.

Armpit swellings(actually tenderness but pain is disproportionate).

The problem with right arm shoulder pain is due to TrPs on the muscle for typing. But what is puzzling me is that now even a bit of bad posture gives a lot of pain.
I forgot to mention that i have also been doing PT on my own (so add 40 more sessions to the PT)


Though even at this time - I remain most concerned about the pelvic pain.

[webslave]

This sounds like fibromyalgia to me, a cousin of CFS. Have you looked into that?
http://en.wikipedia.org/wiki/Fibromyalgia

[ramana]

Yes I did look into that. The various docs that I see don't believe it though. And even if they give me that diagnosis - there does not seem to be any remedy around. I can try guanifesin protocol. I have read other fibromyalgia books but there isn't much other than SP at the core of their treatment plan.

[Clay]

I've no idea what your problem is, but I can surely sympathize with not finding a doctor who is willing to look at any body part outside their area of expertise. The debate on medical insurance is hiding a much bigger debate that needs to take place about the medical care we get when we can afford it.

[webslave]

You know, Ramana, you are still in the early stages of this. With CFS/Fibro/CPPS type illnesses (HPA axis involvement almost certainly), you need to give it a little time, and in cases like yours where the immune system is really riled up, total peace and quiet, a healthy non-allergenic diet, supplements, and patience are essential. I know you are very motivated to get well from all your posts here, but I think you have to take a serious chill pill and be prepared to stay out of the mainstream of life for a while.

[webslave]

This sounds like fibromyalgia to me, a cousin of CFS. Have you looked into that?
http://en.wikipedia.org/wiki/Fibromyalgia

Note this, from the most recent Urotoday:

A unique aspect of this Network is the identification and characterization of pathological and physiological associations between IC/PBS and CP/CPPS and selected co-morbid illnesses including irritable bowel syndrome, chronic fatigue syndrome, fibromylagia, headache, and vulvodynia.

[ramana]

The dry needling doctor that I work with is recommending that she inject lidocaine in perineal body. THe pain management doctor who injected lidocaine into my muscles earlier told me that doing injections in pelvic muscles is very difficult and therefore he needs to use fluoroscopy. The dry needling doctor (MD) and around 50 years of age says that reaching the perineal body is pretty easy but like any good doc gave me a choice (she uses a 27 gauge needle). I am confused. Any recommendations

[webslave]

The perineal body is a fibrous ligament between the bulb of the penis and the anus. It is small and east to miss. Using a flouroscope to help inject it is a good idea.

[ramana]

Thought I should post this because this may also give some insight into what is happening with me. Especially since I am reading that no one seems to have stopped ejaculating for as long a time as I have.

I never had any sexual problems until last August 2007. (In fact I did not know that sometimes, men experience pain post orgasm and it is normal)
Since the onset of testicular pain (And erection pain), I have not had the courage to ejaculate voluntarily. I do have nocturnal erections and I have had 3 nocturnal emissions so far. Nothing much to speak of.
I talked to PT about it and she wondered if that is causing additional pain. She did not have any idea.
Should I be concerned?
MRI/ TRUS / semen test ( all done in August 2007) showed everything as normal. Erections still give me pain... (all left sided)

[kevin]

I think it makes sense for some people to have sex and for some people to abstain depending on how this affects their symptoms. Here's an excerpt from a good recent paper by Magnus Fall:
http://pubmed.ncbi.nlm.nih.gov/18432526

Should the CPPS/PPS patient be advised to abstain from ejaculating?

There are various views concerning this subject and the scientific literature is sparse. It has been suggested that the patient should ejaculate frequently, as this is thought to give symptom amelioration. However, this advice has weak scientific backing and other physicians have arrived at the opposite conclusion, namely that abstinence from sexual activities and ejaculation is beneficial. The only study addressing this issue included men with CPPS/PPS without a partner, and found that men who were encouraged to masturbate on a frequent basis improved. However, methodological flaws were inherent in that study, and the number of participants was low.

In a recently undertaken descriptive study we found that ejaculating frequently improved the situation as often as it made it worse. Until this issue has been addressed in controlled prospective studies, it is reasonable advice to simply tell patients to have frequent ejaculations if this results in symptom relief, or to abstain if they feel that this improves the situation. Consequently, there is a need for studies clarifying the association between CPPS/PPS symptoms and the frequency of ejaculations. This also goes for repetitive prostatic massage, which has been more or less abandoned, but in which some interest has recently been regained. In a recent study, it was not found to enhance the response to antibiotics, but this contrasts with other studies where some positive effect was reported. This may appear to be a trivial subject for scientific studies but is in fact most relevant for men suffering from CPPS/PPS, as it concerns standard advice given to them.

[ramana]

Thanks Kevin. I should have clarified my point further. Does the fact that there has not been much ejaculation makes the vessels 'clogged' and contribute to the pain. It sounded like BS to me but I have heard it from some people in the know (but they admitted that it is difficult to ascertain without any tests). I just wanted to elicit opinion from the gurus and their experiences.